OH TOOTH FAIRY...

Before cancer I had a nice set of teeth with only 3 cavities my whole life. My father spent a lot of money on braces to make them perfect. After having radiation to my tongue and jaw area I was warned that I would forever have problems in those areas and it would be crucial to use a dental expert familiar with radiated bone. An extraction by an unqualified dentist might actually result in a shattered jaw.

You take that news with a grain of salt at a time you just cheated death. Eight years later my upper jaw has shifted about one full tooth's length so my teeth don't line up anymore. I'm told it's actually a result of the skin acting like shrink wrap on the jaw along with some muscle damage and bone loss.

A year ago I slowly began losing the lower horizontal half of an upper front tooth that just slowly wore away over time. I think tonight I lost the vertical half of my second one located directly below the first. I just noticed it was missing before bed. There was no  pain or indication there was a problem and both teeth are still fully rooted. I'm not even sure it's worth having them fixed if they are just going to fall out eventually.

I've met several people along this journey who were told to have all their teeth pulled before having radiation. I was grateful they only wanted to remove two of my molars. And people ask if I ever get depressed! HA! I'm really not sure what else to say at this point....It's the gift that keeps on giving. Even when you think it's over, there is always something new waiting for you around every corner!

Peace B

Christmas Eve Traditions

I had just finished an arduous day of last minute holiday shopping. It was Christmas Eve and I had treated myself to a lavish meal at Ernie's on Montgomery Street in San Francisco. This was THE most luxurious restaurant I had ever had the pleasure to dine in. My favorite of all my local hangouts.

The service was impeccable and the food outstanding. It was on the high end of the price range, but worth every penny to me. The famous mahogany bar with its intricate, stained-glass back was carved from a single tree, the walls were covered with maroon Scalamandre silk brocade, magnificent crystal chandeliers hung above the main dining area. The rooms were adorned with antiques procured from some of the greatest mansions in all of San Francisco.

Ernie's had the distinction of receiving 32 consecutive 5 star awards and Alfred Hitchcock chose the restaurant to be featured in his film Vertigo. To say this establishment epitomized fine dining would be an understatement. Ernie's opened around the turn of the 20th century, but sadly closed their doors in September 1995. I was honestly crushed. I have NEVER had a fine dining experience of that caliber since then. In fact I always wanted to own that type of high end dining establishment like Ernie's.

Screenshot of Ernie's from Alfred Hitchcock’s "Vertigo" 1958

That night I dined like a king! I deserved it. I worked hard. I began with a bottle of California Cabernet Sauvignon. A plate of veal Oscar (sautéed veal on fresh asparagus tips, topped with Dungeness crab legs, and drizzled béarnaise sauce) magically appeared before me. Next to my delight the brandy caught fire, the blue flames shot aloft and an order of boffo crepes Suzette were summoned forth from a thin copper pan. The flames did their work, burned themselves out and vanished. It was theatrical heaven table side! And for the grand finale, a fine Cognac, or perhaps two to celebrate such a wonderful Christmas Eve.

After the $120 dining spectacle I was driving home in my new convertible Corvette. Life just couldn't get any better. I was on top of my game and thought nothing about spending that kind of cash for a meal. I had everything a person could ever want at my beck and call, monetarily speaking.

As I drove through the city making my way back to an overly grandiose home nestled in the foothills of the East Bay, I noticed an unusually large amount of homeless people sleeping under large pieces of cardboard and tattered rags, huddled in doorways trying to sleep on the cold cement stoops of homes and shops. It hit me hard how unfair life can be and how awful a life like that must be. I had everything and more and they had a cardboard box for comfort without a roof over their head.

I stopped the car and stared at one old man as he shivered before me, curled up in a ball, all alone. I just couldn't believe what I was seeing after thinking about the wonderful day I just had shopping and gorging myself on an overly priced meal. It was Christmas Eve and this poor man had nothing! I thought, "That could be me someday." The thought haunted me as I continued to stare in disbelief. I remembered I had a down comforter I just purchased that afternoon for my spare bedroom. A spare room...not even a necessity. There was nothing to think about. I grabbed the bag, got out of the car, and quietly shrouded the old bearded homeless man as he slept. I didn't wake him. I crept away and thought, "I need to do more." It felt good, and for years I told no one about what would become a Christmas tradition.

As I drove home that evening I promised myself I would begin to collect clean, used blankets from any source and every Christmas Eve I would drive into San Francisco and play Secret Santa to the homeless. I usually collected so many blankets that I needed to rent a van to deliver the tidings. It was my way of giving back. I would usually send out a press release for such an event to capitalize on it because I was a media whore in business. But this was personal and it felt so good to do it without anyone’s knowledge. It felt DAMN GOOD!

For years I did this until I became very ill for the first time in 1995. Around the same time Ernie's closed their doors for good. After that it was hit and miss although my company was involved in helping Glide Memorial Church feed the homeless in San Francisco and sponsoring the Easter Seals Telethons. I made sure there was always some charity we were giving to, but nothing has ever felt better than playing Secret Santa.

As I write this, I’m sequestered in bed fighting my second battle with cancer. I wish I had the energy to do more. There will always be someone who is in need of support and they might even be too proud to let anyone know how bad it is for them. Please do me a favor. Do something good in the world this year. Buy a stranger some coffee, leave an extra-large tip for the hard working wait staff, donate toys for a children’s charity, pay for a less than fortunate family’s entire holiday meal, or volunteer at a local homeless shelter or soup kitchen. If you can’t manage that…keep a smile on your face as you pass others in the street and actually say, “Merry Christmas” or “Have a great day” to strangers.

Make a difference to someone this year. If you have the means to read this story you already know you have more than so many with real need in the world. Someone desperately needs your help. Your heart will be richly rewarded. I guarantee it!

It's time for me to settle in with my hot cocoa, a roaring fire, cuddle up with my little dog and watch “It's A Wonderful Life.” I need my wings! Anybody here a bell? Yes, life is wonderful...tonight let there be peace on Earth.

God bless you all, Merry Christmas!
Peace B

THE CHRISTMAS TREE

Wish We Could Be Together At Christmas

I know some of you might have read this story before, but every year as the tree goes up I stop in peace to pay tribute to my wonder father. I think this Christmas story bears repeating. Happy Holidays! Peace B 

I grew up in Michigan. My aunt had a very realistic imitation Christmas tree manufactured by Mountain King, which I loved. I searched high and wide to find this tree, to place in the lobby of my new restaurant. When I was unable to locate one, I mentioned to my father during one of our nightly phone calls, “When I return home for the holidays this year, I’m buying a Mountain King to bring back to California.”

I searched for that Mountain King tree in California with no avail. It seemed the majority of Californians purchased real trees. I never agreed with the idea of cutting down a tree just for a few weeks of self gratification. I admit, they are beautiful and fill a home with a heavenly aroma, but I can’t kill a tree for that reason. Just the thought of the shear national number of trees cut only for this reason each year, makes me ill.

I was only in business for 6 months as the holidays approached. I wanted so badly to return home, to Detroit, to see my father for Christmas. I was born on this day and this has always been my favorite time of the year.

It wasn’t going to be easy, but I thought I could slip away between December 24 and 26. I was expecting business to be slow those days, but knew New Years was going to rock, so I had to return before. The crew was still green and I was still learning how to run a business. I don’t know what I was thinking, but I was going home! I missed my dad.

Nightly, I spoke with my father on the phone to discuss the day’s events. I’d bitch or brag and he’d listen and offer advice when he could. My father was a good man with the best work ethic of anyone I’ve ever known. He was a good listener and always offered sound advice.

Al Starkey and his wife Marge were new Little Caesar franchisees and had come to my restaurant to learn, while they waited for their first location to open in Monterey, California. Al and Marge were much older. Well... all the other franchisees were much older. I was the youngest franchisee at the time. Al wanted more experience running a Carry-Out unit and I needed the help, so it was a win, win.

I remember that day so clearly. It was a busy dinner rush and I was working the register. In the beginning, I had a hard time letting anyone touch the money. We had 4 phone lines that were constantly ablaze during the dinner hour. As I opened the cash drawer to make change, I heard an employee say, “Brian, it’s for you.”

“Is it an emergency?” a question I would ask anytime a personal phone call came in during a busy hour. I always heard a no, but this time the employee said, “Yes, it is!”

I was handed the phone and had a bad feeling in my gut. It was my Aunt Carol. This is a woman who NEVER calls. All she said was, “Brian, are you sitting down?”

Instantly I knew there was something wrong with my father, but before I had a chance to calculate it, she tearfully said, “Your father is dead.” At that point everything stood still. All I remember is sinking to the floor behind the front counter with the cash drawer left wide open and unattended as Al swooped down like an enormous eagle and scooped me up in his arms as I screamed, “NO!” with tears streaming down my face.

I wasn’t supposed to fly back for a few days and I wasn’t near prepared to leave at this moment. How will the restaurant run while I’m gone? I will need to be away now for more than a few days and I only have one assistant manager in my employ. I had no manager since that was my role. Who will make the deposits, get bank change, place the food order, pay the bills? Who’s going to sign the payroll checks? I will be thousands of miles away and for how long? What am I going to do?

It was all a blur, but in less than 12 hours I was on my way to the airport and a Corporate Little Caesar Supervisor was being flown up from Los Angeles to run my restaurant until I returned. There wasn’t anybody else closer to help. My restaurant was the first in the Bay Area.

When I arrived at the San Francisco airport, there were people everywhere, sleeping on luggage. The airport looked like a homeless shelter. Dozens of flights were canceled due to inclement weather. I waited in such a long line staring blankly at everyone and everything, not knowing how I even got to the airport.

Al had called our corporate headquarters and made arrangements for the supervisor and then managed to get me packed and rushed to the airport. I was on autopilot without a clue what was happening.

As I approached the United Airlines ticket counter, I handed the lady my ticket. It was for a flight on the 24th of December and today was the 22nd. I vaguely recall the conversation, but it didn’t go well. She assumed I was just trying to get on an early flight, because of the holidays. All flights out of SFO to Detroit were booked for days because of the weather.

I explained my father had died and I had to return home today. She accused me of lying, sighting that I already had a ticket and that she was sure I was just trying to leave earlier. She asked for proof of his death and requested a copy of his death certificate. With that I exploded. All my emotions came spewing out. “I don’t have one! He just died!” I snapped. With authority she responded, “I need to see some type of proof.”

I became enraged, belligerent in fact. “My father is dead dammit! I’m not lying to you! What the hell is wrong with you? Why would I make something like that up?” I was so loud and she was so offended and scared from my anger she called security.

I was escorted, screaming, into a private room, calling everybody, "Crazy!” It was I that was falling off the deep end. The security officer calmed me down and asked if there was a way to call the funeral home for more information. Once they confirmed my father was indeed deceased, EVERYBODY’S demeanor changed. My coach ticket was exchanged for a first class seat and I was on the next plane to Detroit. They couldn't do enough to make up for their mistake.

Seated next to me was a young boy, perhaps five years old, traveling alone with a large bag of toys. The flight attendant was well aware of my dilemma and apologized for the seating arrangement, but that was all that was available. It didn’t matter, just keep feeding me drinks (Black Russians) for the next 5 hours and I’ll be fine. I just want to go home!

I drifted off to sleep and the young boy escaped from his seat. That was just fine with me, until a very angry man stood before me, screaming at me, “Keep your brat and his toys out of the isles! His sh*t is everywhere!"

Apparently the lone child took out all of his toys from the paper bag his mommy packed and had strewn them all over the coach cabin without a care. As the angry man verbally assaulted me, I stood up to explain he's not my kid and fired back at my assailant, telling him to go f*ck himself. I think it took the entire flight crew to restrain the two of us. If this would have happened today, with all the flight regulations they have, we both would have been jailed.

They escorted the man back to his coach seat, picked up all the toys throughout the cabin and instructed the boy not to leave his seat again. I requested yet another drink, as the little tyke said to me, “You don’t like me, do you?”

“Right now? NO, I don’t!” I scowled, and the little boy pouted as tears welled in his eyes. “Look,” I said to him, “Let's make a deal. I’ll make you a tent to play in if you just be good, deal?”

That made him happy and I pulled out his tray table and shrouded it with an over-sized blanket. He disappeared into the darkness of the blanket and quietly played with a toy. It was peace on Earth…well peace at 35,000 feet anyway!

When I arrived, I was pleasantly plumbed from all the free liquor. My Aunt Carol was waiting at the baggage claim to pick me up. I insisted on immediately going to the house where I grew up. My aunt didn’t think it was a good idea. “Your father died in that house.” She expressed with concern. My two aunts and a neighbor were the ones that found my father dead in his arm chair.

“I don’t care. I didn’t see it and it doesn’t bother me. I want to go home!” I insisted. When we arrived, I let myself in and closed the door leaving my aunt outside, so I could be alone with my thoughts. I don't even recall saying good-bye.

As I entered my home I was in awe. Before me, lit up so beautifully in the living room, was the most precious gift I have ever been given. There stood the most spectacular Mountain King Christmas tree I have ever seen. It was decorated in all blue and green. My father, being the perfectionist that he was, had purchased strings of blue and strings of green lights. But, to make it perfect, he managed to exchange every other bulb, so they were arranged: blue, green, blue, green, blue, green. He knew only I could appreciate such an effort. Can you imagine the time that took?

The Most Beautiful Christmas Tree EVER!

There were blue satin bells and blue satin balls hanging, yards of blue and green tinseled garland, blue tinsel icicles, all topped with a huge blue velvet bow. To perfectly finish it off, wrapped around the base was a tree skirt that was made for my first Christmas birthday by a loving aunt. It was spectacular! Through my tears I spied a Christmas card propped at the base of the tree. I felt my father in the room with me as I slowly reached down to read the card:

“Wish We Could Be Together At Christmas. You were the best Christmas present I ever had.   Love Dad”

As I read, endless tears streamed down my cheeks. I fell to my knees and whimpered uncontrollably, gasping for breath. How did he know we would never see each other again? "Wish We Could Be Together At Christmas???" He knew I had a ticket to come home. I reread the card over and over “Wish We Could Be Together” It still read the same. How did he know?

The Most Beautiful Christmas Card EVER!

I cried myself to sleep that night and quenched the moon with my tears, curled up like a baby beneath the shimmering blue and green until daybreak fell upon the room, the wetness in my eyes still present from my crescendo of tears.

After the funeral there was so much to arrange and many bills to pay. When my father’s credit card bill arrived, the story of the tree gained clarity. My father bought the tree and decorations the very day he died.

My father died after he finished putting up and decorating that wondrous tree. Judging by his time of death, 11:05 PM, December 20, he purchased the tree that afternoon, spent hours putting it up and decorating, and began his nightly ritual; getting ready for bed, showering, putting on his PJ’s, then sitting down to watch the 11 o'clock news in his favorite tangerine colored Naugahyde armchair, seated within his bedroom. He passed away in that chair of a heart attack. I was told it was so massive, he probably never knew what hit him.

Two years passed and I could not bare to reconstruct the tree. It never made it into my restaurant still dormant after being placed back into its original box. I kept it for myself thinking someday I might put it up in my home, but it hurt too much to even look at the box. Eventually I gave in and thought, “He wanted me to have this tree to enjoy. He died giving me this tree to enjoy. Dammit, start enjoying it!" So, every year you will find dad’s tree lovingly displayed at Christmas, decorated as he left it for me to find, with the tree skirt and his card beneath.

To Dad,
Wish we could be together at Christmas. You were the best father a son could ever have.

Love Brian

HAPPY THANKSGIVING!

GIVING YOU THE BIRD

I just wanted to take a moment to say I'm still alive and kicking! The last few months have been grueling and I'm very tired. I hope I can catch you all up soon. Things are slowly progressing in a positive direction. Thank you all for your continued love and support!

On that note I give you all the bird! HAPPY THANKSGIVING!

Me basting my first bird

THE OTHER SHOE HAS DROPPED

My Cancer Has Returned

After spending weeks trying to get what we thought was an infection under control, it became obvious this was a much bigger problem. I made an appointment at the H. Lee Moffitt Cancer Center to have a biopsy and a CT Scan which the doctor ordered. It's offical: My cancer has returned. The same type, a Cutaneous Squamous Cell Carcinoma of the skin.

The problem began as only a dime size ulcer only to take over the right side of my face starting under my chin and growing to a 6 inch X 3 inch oval climbing up my neck. If you are a regular here you know I've always said I was one of the lucky ones because everyone I have met has had at least one reoccurance...and now I join the group I was happy not to be a part of.

Now for a plan. Not so good news here. Frankly I was rather shocked. Squamous cancer of the Head & Neck which I had before is different than Squamous of the (exterior) skin. I'm told there is typically a very high cure rate if caught early. You cut it out and use chemo and radiation if necessary. That would be great if I wasn't dealing with a compromised immune system and my primary care doctor didn't think it was an infection allowing it to grow so large, AND if I hadn't already had 60 grys of radiation that really destroyed all my skin in the entire radiation field. I was left with extreme scarring and tight skin. Because of the past surgery and radiation they have been deemed not a good idea at this time, unless I want to cut my face off. For now my only option seems to be chemotherapy. Which is typically not used as an only resolve in a case like this and does not have a very good cure rate at all. Yes, I had myself a good cry over all this information.

My doctor at Moffitt sent me to see another doctor, Dr. Russell who was beginning a new trial using a combination of two drugs, a shot typically used for patients with Hepatitis-C (Peginterferon Alfa-2b) which I don't have and a pill used for breast and colon cancer (Capecitabine) again I don't have. Since my options are limited I thought, "Sure why not?" Trials are free right? WRONG!

I received an automated phone call a few days later telling me my prescription was ready and I could pick it up at a cost of $3,300. THIS HAS TO BE A MISTAKE!!?? And that was only the chemo pill. Nothing was mentioned about the cost of the shot. I'll get to the cost breakdown in a minute...hold on to your hats!

My next appointment was only a few days away and I made some calls looking for more opinions. I was lucky enough to find Dr. Edward Kim, my oncologist from MD Anderson. He has moved on to Levine Cancer Institute in North Carolina. Believe it or not it was through Twitter that I found him. The day I asked the Twitter account for Dr. Kim's information I was contacted within hours. I gotta say, I LOVE Twitter. It has save me several times. By the next morning I had his nurse on the phone getting my information and asking me to forward my medical history from the last time he saw me including what has been done at Moffitt. I trust Dr. Kim and the following day he spent 30 minutes on the phone with me going over what again I was told were, "Very few options."

Some of what he told me I had heard from Moffitt. I was hoping for better news. It seems that Squamous Cell Carcinoma is a common cancer, but the way mine has reacted and grown so quickly adding the fact that my options are limited because of the breaking down of my skin just makes my problem very uncommon. In fact so uncommon there aren't a lot of options because the drug companies don't want to dump money into a cancer problem they can't make a return on their investment. As a business person, I get it. As a cancer patient I think it's BULLSHIT! This is why my doctor a Moffitt is experimenting with drugs that aren't traditionally used for Squamous Cell Skin Cancer.

Now back to Dr. Russell's trial...As we sat and discussed the outrageous cost of the chemotherapy which I am expected to pay for, I asked about how much the shot would cost. He looked it up and in a monotone voice said, "The Peg-Intron shot would be $4,000." At this point I came unhinged and I think I used every word in the Do Not Use In Your Professional Life Dictionary. "You have got to be out of your FUCKING MIND! That's $44,000 for a six month TRIAL that has only had 3 patients and none of them had an positive result? This is nothing more than a gamble and I thought a trial was basically free if I'm putting my life on the line to be a guinea pig for the benefit of future cancer patients." And that's not including the weekly office visits, lab work, and CT Scans!

I think Dr. Russell was a bit shocked at my reaction. He said this didn't seem to be a problem for his other patients. I had to hold my tongue...well my forearm if you know what I mean. I could only think either these patients were millionaires, they were so desperate thinking they might die they would try anything, or they didn't understand this was not being covered by insurance and didn't ask enough questions. I think being a seasoned cancer patient must be a doctors worst nightmare. I've seen what happens when I don't ask the questions and the outrageous bills come in. Remember the $10,000 and the overnight stay at the hospital to just pull TWO TEETH? Yes, insurance paid the majority of it, but I was still left with a 20% co-pay.

At this point you all might be thinking...What about other opinions?? Why aren't you going back to MD Anderson? I needed Dr. Kim to reassure me I had very few options. MD Anderson is not in my current insurance network therefore I'd have to foot 100% of that bill and travel expenses are a killer. It ended up like Vegas. I left all my money there last time and my financial options are limited. Remember I've had 20 years of medical issues and until now I have been able to pay my bills without too much of a problem. But last time my bill was over $250,000 (20% of that was mine to pay) which I just paid off! Plus I had the expense of flights and an apartment for 9 months. I have made contact with Sloan Kettering in New York. I was told they are in my network, but again flying back and forth on a commercial plane with so many other people with my compromised immune system and finding a place to live during treatment will be an issue. They might have a trial there for my type of cancer.

At this point I have never felt more defeated in all the years. This new Obamacare is a mess. There are some good things to come out of it, but not if you really need to use your insurance. I have been on Medicare for a years now and recently switched to a Medicare Advantage Plan. Too much detail to discuss now. The bottom line I need an answer.

I found some things online that discussed Anti-Antigen Therapy I found interesting, but apparently it has not been tested on humans, but the trials with animals have been 100% successful. This is the kind of trial I wish I had access to:



 SO...what am I going to do? This thing has grown so quickly and is more painful than any pain I've ever had. I made an spot decision when Dr. Russell kept asking me this same question. Starting tomorrow I begin with Erbitux Chemotherapy. Where did that come from?? Well, I was on Erbitux after my tongue surgery along with radiation in 2007. This drug works better when used with radiation, but that option is out. Unfortunately I was supposed to have 6 rounds of chemo when on I the 3rd I broke out in a rash of all rashes. It was EVERYWHERE!  Front, back, in, out you name it, it was red. Then why would I try this again. To buy some time. To do more research in hopes to find a better answer. Maybe even another doctor, or cancer hospital. Or maybe, if Dr. Russell can find a way to bring the cost down on his trial I could try it. A little good news there. I was told that the $3,300 was a mistake because this is considered a Medicare Part B drug and not a Part D drug and when they ran it through the system that way it came back at ONLY $600 a month. Ok better, but holy shit! Plus $4,000 a month for the shot? The numbers still need work.

I can't help but thinking, "Wouldn't a cancer hospital know the difference between a Part B and a Part D drug? And if I was running a trial, I would have all that information ready and even find ways to help the patients financially if I really believed in the trial. Now I wonder if this trial was just something he pulled out of a hat one morning over coffee or is he actually going to save my life even if he bankrupts me in the process?"

This is going to be a very difficult ride this time. I'm so very tired of talking about cancer. It's done nothing but rule and ruin my life the last 7 years. I know I shouldn't complain because I'm still here to bitch about it, but even that is growing old and so am I!

Thank you all for your love and support. Wish me luck tomorrow. I've had a great life and I've been so close to death I could smell the dirt, but for some reason I'm still here. I gotta say, Dying is easy, it's living that is the hard part! I don't want to sound like a quitter, it's never been my nature...but I'm really ready to go at this point. i don't want to suffer anymore. From this point on I think it's only going to get worse. It's not a good sign when the positive outlook is gone. Even I know that.

Peace B

HOW MUCH CAN ONE MAN TAKE?

MISERABLE!

I am over this shit! For the past eight weeks I have been fighting what we think is an infection on my chin. It started out the size of a dime and now measures 3 inches long. More shrapnel from surgery has worked it's way out of my neck just before this began. I now have a cap full of staples, wires, and tips from where they inserted a Doppler wire when they removed the cancerous tongue!

March 2014

June 2014

To the right of this is where infection began. Small at first, I went to the doctor. I tried a penicillin based antibiotic, Cephalexin. Ten days latter some relief, but not enough to solve the problem. So another ten days of the same drug. Twenty days later the wound had drained but was still not looking good. It was about five days later when I saw the doctor again and he put me on Dicloxacillian for another two weeks.

At the end of the two weeks the drug did absolutely nothing. In fact the infection site became bigger, harder, and SO much more painful. The pain is different than I'm used to. Yes, I said used to because I have several problems with pain in my jaw area, neck, and lower back. But even with medication this pain is different. It's like a hundred tiny needles stab me in the face and then it's gone. It's quick and comes out of nowhere. I'm assuming nerve pain? Bottom line is, my pain meds do nothing for it.

Finally I called the doctor when Dicloxacillian was finished and told him it didn't work at all. Now back to the one sulfur based drug that has worked in the past, but upsets my stomach, Extra Strength Bactrim. When I take this I just want to lay in bed and not move. The more I move the more it seems to upset my stomach. At this point my cheek is so swollen I bite it when I try to eat anything.

M-I-S-E-R-A-B-L-E !

Dinner has always taken me a long time to eat since I came off the feeding tube. Now it can take over an hour! I'm at a deficit with the new tongue fashioned from my forearm. The mobility is restricted and because it's smaller than what a normal tongue is, it's just harder to manipulate food. The swelling is making it even more difficult. I'm cutting up my food tiny pieces and only chewing half my normal amount while puffing up my mouth with air to chew so I avoid biting my cheek.

Since I began eating solid foods, I have always had to think when I eat. Where is the food at? What can I do to move it where I want it? A swig of water? A tilt of the head? Or maybe putting the fork back in my mouth the reposition the bolus of food. Sometimes I can't even hold a conversation at dinner because I'm concentrating on chewing. Over the years I've become more proficient allowing me to eat with friends without appearing like a total crazy person. The hard part is when I get something caught between my gum and cheek and it won't move. On a rare occasion I have to use my finger, which I try to avoid.

I've only been on the Bactrim for a few days now so the jury is out on whether it works or not. I see my doctor again in a few days and we'll go from there. I'm a little concerned if the Bactrim doesn't help because that could mean it's not an infection after all. I think the next step is a biopsy and/or hospitalization. I'm either becoming immune to antibiotics or my cancer is back. A few areas of my neck appear to have slightly swollen nymph node activity. When they did my neck dissection during my cancer surgery they found cancer in the lymph nodes and that's what prompted the need for radiation and chemotherapy. I would NEVER suggest radiation to the face unless it was your last option. I'm not sure I have the energy to go through all that again.

I don't want to leave the house. I look hideous. I can't do anything outdoors for fear of sweating and making the infection worse. I can't take anymore of this shit! Just shoot me! I'm FK'N MISERABLE! And maybe a little bitchy too...more than usual!

No Peace this time...B

A Hero's Message on Memorial Day

In honor of Memorial Day and Skin Cancer Awareness Month a message from a brave hero, Bob Pemberton: A strong Veteran and Cancer Warrior whose last selfless act was to leave this message for others to learn and grow...Mr. Pemberton...I salute you!

Dead Man Talking

By Brian N. Walin

After living with my cancer for many years now, I have met several cancer patients along the way. Most have some other type of cancer. Only a few have the same, rare tongue cancer that I do.

What makes this story so difficult to write is the fact that most tongue cancer patients I have met along my journey are no longer with us. Squamous carcinoma of the oral cavity is responsible. This is an extremely aggressive cancer that leaves the recipient with a 50/50 chance to live five years, after being diagnosed. If it has infiltrated the lymphatic system, it can further worsen those odds by an additional 25%.

In 2007, after being diagnosed myself, I began to aggressively fight back. I underwent several operations to remove the Stage IV venomous growth along my left lateral tongue and the floor of my mouth. Cancerous lymph nodes were excavated from my neck. An uncomfortable tracheotomy allowed me to breath. The corners of my mouth were filleted open to allow access to the project within.

Body parts were rearranged: a skin graph from my thigh covered the hole that was left after removing a skin flap from my forearm that was then used to fashion a new tongue. Dangerous radiation and cancer killing chemotherapy followed…more invasive surgery to my oral cavity and a two and a half year engagement with a life sustaining feeding tube protruding from my belly.

After months of speech therapy, mouth and tongue exercises, food modification, depression, and mounds of mind-numbing medication, I’m exhausted. I’m still alive, winning my battle, and eating some solid foods, but always concerned cancer will strike again and I will repeat this dance anew.

The clock is ticking. Half of my time here is gone, according to statistics, yet I am still cancer-free. In my mind I fear the evil will return. I think that is a fear all healthy survivors have. You live day to day with that cancer cloud looming overhead. I’m free, but am I really?

Every time I lose a fellow tongue cancer patient, it’s a staggering blow that brings me front and center to the harsh realities of this dreaded disease. I personally don’t have an issue with dying. I’ve faced that road before. It’s the suffering, pain, and overall loss of the quality of life that goes along with continual treatment that is an issue for me. Horrifically, “life altering” does not begin to describe the reality of the situation.

Many friends and family members of cancer patients ask themselves, “What do I say at a time like this? How do I react? What can I do?” or even, “Why?” as they watch their loved ones suffer a slow, agonizing defeat.

First, let me go on record to say there is no answer to, “Why?” It is what it is! It isn’t anybody’s fault. It’s not a punishment, nor is it anything you have total control over. For those of you with controlling personalities such as myself, let this one go!

Having been close to death a few times now, I feel I can give advice as to how you should treat a cancer patient. Just treat us as you always have. No matter how bad we look or how weak we are, we want life to be as normal as possible. Save the tears, we don’t need them. Jokes are a good thing, laughter is best. Reminisce about the good times, and hugs are always welcome, if not longed for.

We are no different with or without cancer, even if we have no hair! Be honest with us and yourself. We know our odds aren’t good. Don’t make things worse by throwing a pity party. Now is not the time to hide from the truth. While life hangs in the balance, emotions are raw. Don’t say or do things YOU might regret later AND say all the things you wish to say, before we are gone. We need to hear them now.

We need a caregiver and patient advocate who is strong and caring and understanding of OUR wishes and not those you think we want. If others object to the plan in motion, remind yourself, these are our wishes, not theirs. This could be our finale, our last goodnight, and therefore needs to be our choice how things should be managed.

Personally, I don’t like to be fussed over. I prefer to do as much as possible for myself, even if it appears I’m struggling. I will let you know when I need help. I need that independence to get my strength back. If I let you do too much, it’s like saying, “I give up!” which is never a good thing. I think it’s essential for a cancer patient to remain emotionally strong and independent to survive, if not be down right stubborn.

I’m compelled to write this, because once again a fellow tongue cancer patient’s life hangs in the balance. The harsh realities are rearing their ugly heads. Bob Pemberton, is a friend and fellow tongue cancer patient. I met Bob after I completed my last surgery, while still sporting my feeding tube. We had a long “talk” about life with tongue cancer and the necessity of a feeding tube.

Bob, is someone I look up to after being through so much more than I have at this point. When I now look at Bob, I see what my future might be. He’s like the senior classmen and I the novice freshman student.

I generally maintain this blog to surround readers with my life and my cancer issues…Me, Me, Me! But, today I am inclined to open up the door and let Bob in. Not just Bob, but other readers and fellow cancer patients. I thought I would set the stage and have an open, raw, discussion with a man who is facing a death sentence. Something has compelled me to do this. I can’t tell you why, but I think either selfishly I need it, or I feel that others need to hear it. Especially those who are healthy and think they have something to worry about. Perhaps we’ll even touch on the meaning of life.

For me this is a personal project. I wanted to enroll the help of several people who are also surrounded by cancer in some way, to interview Bob. My goal is to obtain an open and honest dialog about doctors, treatments, and what it is like when you’re not sure if there is a tomorrow. For those of you who get upset because you get caught in a traffic jam, or have lost your home or job in this bad economy…look out, this might just change how you view the rest of your life!

If you had the opportunity to ask a dying man life altering questions, would you, could you? In Part 2 of this blog post you will find six seasoned cancer veterans who volunteered to step up and ask Bob some riveting and emotional questions. Bob has agreed that EVERYTHING is on the table for discussion. This has not been easy for any of us involved. So, stay tuned for the most enlightening story I’ve ever written.

©2009 Brian N. Walin (All rights reserved)

LINKS: PART 2 - PART 3

I've Met My Match

Well, where do I begin? Nothing earth-shattering, just trying to get back into the swing of things. I've said it before and I will say it again...I KNOW I'M ONE OF THE LUCKY ONES!

I'm now into my 7 year Cancerversary and life should have returned to "normal" a long time ago. As a cancer patient you fight hard to survive as you watch some on your fellow warriors lose their battle and you begin to wonder if you are next. I started this blog as a means to communicate to friends and family what was going on in my life so I wouldn't have to repeat myself every time the phone rang.

Over time it morphed into a way to vent about my struggles and then a way to help others through theirs. As time progressed some of those I met at hospitals, doctor's offices, and this blog became friends. We shared our highs and lows through emails and other social media, but then things started to change. One by one I lost some of those people I began to feel so close to. We shared things with each other that only a fellow cancer patient would understand and we helped each other through of the rough times. Some of the emails I sent would not be returned and later I found they had lost their fight. Soon I would morn people I only knew for one reason, cancer. Some I had only known online.

I guess I should have realized this would happen, but I never realized the magnitude and the number that would die. Some of these people I knew for years. Last December I had the hardest blow of all. Jeanne Sather helped me edit this blog at times. Because of her blog, The Assertive Cancer Patient, which I referred to as 'Bitch Don't Mess With Me!" she helped me through more than just cancer.

One story she helped me with and I am most proud of was "DEAD MAN TALKING."  A story of a fellow tongue cancer patient who was losing his battle and finally passed before we put the finishing touches on the story. Bob Pemberton was the first cancer friend that really hit me hard because we had the very same oral cancer. When I heard the news of Jeanne's passing I just went into a fog. She fought so hard to stay alive. There was nothing more she could have done to survive that she hadn't already tried. This woman was a force to be reckoned with.

She was a professional writer, editor, teacher, National Merit Scholar, jewelry designer, and lived with cancer for 13 years. She studied in Kobe, Japan, achieved a Master's Degree and Japanese Language and a second Master's Degree in Journalism. Jeanne was a translator, worked for a Japanese Broadcasting company and also worked for Newsweek among other news organizations. All this while adopting and raising two boys.

I guess this remains the hardest part about this blog and the people I meet because of cancer. There are times I get so tired of explaining how I can talk, how hard it was living on a feeding tube for so long, and how much my life has changed. I tried to wipe away the bad memories and pretend all is well and the worst is behind me. Looking in a mirror doesn't help. My battle scars are plentiful and bring me back to the day I lost my tongue every time I gaze into one. I avoid mirrors as much as possible and don't even allow pictures to be taken anymore.

Jeanne once asked me to send her a current picture and as tough as it was I sent here one. She was being kind I know, but she sent a simple note back..."Very handsome man." Friends have said I've had the scars and bandages for so long they don't even notice them because they know me from within. A very kind way to see others and so appreciated.

On occasion a stranger wanders by and has to ask the inevitable question often at a time I'm feeling very normal and cancer is not even on my mind. Then with one sentence I'm back on the operating table. Last week I was out in the front yard trying to tend to the flower beds when two young brothers four and five years old walked past eating candy. They stopped and very politely asked.."What happened?"

Doppler wires that came out of my neck 3/14

A few days before this I had another battle with those damn Doppler wires coming out of my neck. Last year at this same time I had the same problem. This year four more tiny wires worked their way out of my neck infecting it and causing great discomfort. Once again I am bandaged up for the quadbillionth time. I've been one big bandage for longer than I can recall!

I had surgery SEVEN years ago and my body is still SLOWLY rejecting the shrapnel I was told was made of surgical grade material and I would not have a problem with. THEY WERE WRONG!!!

Total Doppler wires that have come out between  2007-2013

ANYWAY...As the two young boys approached and asked politely the very question I am so tired of answering, I went right to my canned smartass answer. I sharply replied, "What happened? You mean to my face and neck? I got hit by a bus!" The young boy thought for a moment and then replied in a very serious tone, "Oh, well then...you should have driving the bus!" He put his liquorice stick to his mouth, pulled with a snap, and happily continued his walk down the street.

BAM! I've just been one-upped by a four year old! Yes, sometimes you just have to find the humor in all of it. Even if it takes a little man to remind you! Cancer can be funny.


Peace B